Police Work at Developmental Centers Lacking (SF Chronicle)

Sacramento --
The in-house police force at California's developmental centers has frequently neglected to interview victims of abuse, photograph crime scenes or collect statements from suspects and witnesses, according to a state audit released Tuesday.

The state auditor's report detailed numerous shortcomings in how the force, called the Office of Protective Services, protects roughly 1,500 patients with cerebral palsy and intellectual disabilities at five board-and-care institutions in Sonoma, Los Angeles, Orange, Riverside and Tulare counties.

"Investigative deficiencies, such as those we observed, may allow for continued abuse at the developmental centers," the report said. Auditors said they had reviewed 48 investigations by the department and found 54 deficiencies in its police methods.
State lawmakers ordered the audit last year in response to stories by the Center for Investigative Reporting detailing how the force routinely failed to do basic police work when patients were abused, including suspicious death and sexual assault cases.
The Office of Protective Services was set up specifically to protect the developmentally disabled living in the state's remaining board-and-care centers, but few violent crime cases at the institutions have resulted in criminal charges.
Dozens of women were sexually assaulted inside state centers, but police investigators didn't order "rape kits" to collect evidence, a standard law enforcement tool, the Center for Investigative Reporting found. Police waited so long to investigate one sexual assault that the staff janitor accused of rape fled the country.
The police force's inaction also allowed abusive caregivers to continue molesting patients.
The Office of Protective Services' records indicate the force sent 82 patient abuse cases to district attorneys for possible prosecution. However, auditors determined much of the data on the entire caseload were "not sufficiently reliable" to verify that number.
The auditor faulted management of the facilities for failing to provide specialized training for officers in interviewing the developmentally disabled patients, many of whom cannot speak or communicate clearly.
The Department of Developmental Services, which operates the centers and police force, agreed with the findings and said many of the prescribed fixes are already under way. The department declined to comment and referred to its formal response in the audit.
While hailing the auditors' work, Greg deGiere, public policy director for the Arc of California, which advocates for the developmentally disabled, said the police force should be independent of the Department of Developmental Services.
"The whole thing is clearly still under the department's thumb," he said. "There is a code of silence (at the centers), from both the top and the bottom."

The independent, nonprofit Center for Investigative Reporting is the country's largest investigative reporting team. For more, visit www.cironline.org. E-mail: rgabrielson@cironline.org

http://www.sfchronicle.com/crime/article/Police-work-at-developmental-centers-found-lacking-4655775.php

CDC: Autism Rate Now 1 in 50 Children

March 20, 2013

The prevalence of autism has increased, researchers say, now affecting 1 in 50 children.

The latest estimate released Wednesday by the U.S. Centers for Disease Control and Prevention comes from a national telephone survey of nearly 100,000 parents conducted in 2011 and 2012.

Parents were asked a number of health questions about their children including whether they had ever been told by a doctor that their child had an autism spectrum disorder. The results suggest that autism is occurring in 2 percent of school-age children.

That’s substantially higher than prevalence numbers the CDC just last March which put the rate of autism at 1 in 88 American children. That previous estimate relied on a study of health and education records collected on 8-year-olds. The current research included children ages 6 to 17, but is considered by some to be less reliable since it is based on parent-reported information.

Federal officials say the increase is largely due to better diagnosis of autism spectrum disorders. The jump in prevalence was most pronounced among older children with milder forms of the condition.

Consistent with previous findings, the survey found that boys were four times more likely than girls to have autism.

The new estimate released Wednesday by the Centers for Disease Control and Prevention would mean at least 1 million children have autism.

The new study has has tremendous significance for the nation’s service and public health systems.

“These statistics represent millions of families across the country that are looking for resources and answers to help their children. But meanwhile, the across-the-board budget cuts in Washington are hampering the vital efforts offederal agencies like the CDC and the National Institutes of Health,which are working to find the underlying causes of autism,and could have real consequences in our society,” said Peter Berns, CEO of The Arc, Washington D.C.

“And these are not the only threats – lifeline programs like Medicaid, Social Security, and Medicare are on the table for real cuts that may impact the ability of these families to get services in the near and distant future for their children, as well as hurting adults with ASD who depend on those programs today. It is not enough to say we want a balanced approach to deficit reduction - we must stand together and say that we cannot simply cut our way out of this situation. We need more revenue to pay for critical investments like prevention and treatment, as well as services and supports for people with autism,” added Berns.

Dr. Glenn Motola, CEO of The Arc San Francisco, said, "This new data underscores the critical need for support services for not only children with autism, and the adults they are becoming."

See CDC's full report online at: http://www.cdc.gov/nchs/data/nhsr/nhsr065.pdf

Courtesy of Shaun Heasley, Disability Scoop and The Arc United States

March is Developmental Disabilities Awareness Month

    March is Developmental Disabilities Awareness month across the United States and we are so proud of the achievements of people with Down syndrome, autism, cerebral palsy and other disabilities. During this month, The Arc San Francisco is making a special effort to educate the public about issues and concerns related to disability.
    Said Dr. Glenn Motola, CEO, “The biggest factor holding people in this population back is a lack of understanding of their abilities. With the right support, people with developmental disabilities are terrific employees, reliable tenants and civic-minded citizens who make valued contributions to our communities—not only as taxpayers but as volunteers.”

    In late March, The Arc San Francisco’s WorkLife Awards celebrate the work and life achievements of people with developmental disabilities and the businesses that champion their success. Find out how you can be a part of this wonderful story of self-determination, self-reliance and achievement as a sponsor, a donor or a volunteer.
    For more information, contact Terry Goodwin, Employment Services Director, at (415) 255-7200 x148 or tgoodwin@thearcsf.org.

Fiscal Cliff Averted: I/DD Community Says New Battle Awaits

    The New Year's Day deal averting the "fiscal cliff" lays the groundwork for more painful struggles in Washington over taxes, spending and debt in the next few months.
     While the newly passed legislation does not include any cuts in benefits for the entitlement programs, this issue is expected to take center stage in the coming weeks as it becomes a bargaining chip in the upcoming debt ceiling negotiations. In the first three months of 2013, additional legislation will be necessary to address other aspects of the nation’s fiscal situation, including an increase in the debt ceiling, the end of the 2-month extension of the sequester (automatic cuts), and appropriations for the remainder of Fiscal Year 2013.
     These deadlines will set the stage for additional negotiations between the Congress and the White House. There will be mounting pressure to generate additional revenue and to cut the entitlement programs (Social Security, Medicaid, and Medicare) as well as the discretionary programs (such as housing, education, employment) that people with intellectual and developmental disabilities (I/DD) rely on to live in the community. The Arc will remain actively involved in seeking a balanced approach to deficit reduction by advocating for increased revenue and protecting critical spending programs for our constituents.
     Learn more about the fiscal cliff deal at The Arc’s Center on Budget and Policy Priorities website http://www.cbpp.org/ and view statement on the Arc US blog.
(Courtesy of The Arc United States, 1/3/2013)

Thoughts and Prayers to Newtown, CT

The Arc San Francisco sends our thoughts and prayers to the community of Newtown, Connecticut as they--and all of us--try to cope with the terrible tragedy that has befallen the victims, families and residents.

The Arc Lauds Supreme Court Decision, but 'More to be Done'

The Arc Reacts to the U.S. Supreme Court’s Decision on the Affordable Care Act

The Arc released the following statement in response to the U.S. Supreme Court’s decision to uphold the Affordable Care Act.
“People with intellectual and developmental disabilities have been waiting for generations for the insurance reforms put in place by the Affordable Care Act. Today’s ruling removes any doubts that the law Congress enacted should stand and will benefit millions of people with and without disabilities. It ends discriminatory insurance practices and makes health coverage more affordable and accessible – important protections which too many people with disabilities have been deprived of for too long. “But the ruling is not perfect for people with I/DD. The Arc is concerned that disallowing the federal government the ability to withhold Medicaid dollars from states that don’t expand their program to cover more of the uninsured might mean that people with I/DD who would have benefitted from the expansion could be left behind. Medicaid is an incredibly important lifeline for people with I/DD, providing health care and long term services and supports. “We will carefully watch how states react to this development and encourage our advocates across the country to put pressure on their state leaders to do the right thing and expand their Medicaid program,” said Marty Ford, Director of Public Policy for The Arc. The Arc advocates for and serves people with I/DD, including Down syndrome, autism, Fetal Alcohol Spectrum Disorders, cerebral palsy and other diagnoses. The Arc has a network of over 700 chapters across the country promoting and protecting the human rights of people with I/DD and actively supporting their full inclusion and participation in the community throughout their lifetimes and without regard to diagnosis.

Editor’s Note: The Arc is not an acronym; always refer to us as The Arc, not The ARC and never ARC. The Arc should be considered as a title or a phrase.

Contact: Meredith Manning, The Arc San Francisco, (415) 255-7200 or mmanning@thearcsf.org

How Can Bruce Get Good Health Care

Health Care Reform for Transition Age Youth and
Adults with Developmental Disabilities (CA)
UCSF

Bruce is a 30-year old man with autism with a mental age of 2 years old. He is six
foot tall, 260 pounds and terrified of needles. Now he has diabetes. What would i
take for Bruce to get good medical care?

Vision. Transition age youth and adults with developmental disabilities (DD) have access
to health services that maximize their wellness and function. Health care for transition age
youth and adults with DD is interdisciplinary team‐based care with patients and caregivers
at the center of the team.

Definition. Developmental disabilities (DD):

􀂄 originate before age 18

􀂄 are expected to continue indefinitely

􀂄 constitute significant functional limitations in at least three or more areas such as capacity for self‐care, learning, language and mobility

􀂄 include autism, cerebral palsy, epilepsy and intellectual disability

In addition to their disability, most people with developmental disabilities have chronic medical conditions and approximately 30% have associated mental illness.

The Challenges. The longevity of people with DD now approaches that of the general population. Resources provided within the State of California’s integrated systems of care for children with DD are relatively more robust and better funded than transition age youth and adult systems.

When transition age youth with DD reach adulthood, experienced physicians and other trained health care providers are typically no longer part of the picture. Health care needs continue beyond childhood, but the mandate for a wraparound, comprehensive support system does not.

Resources for adults are insufficient and poorly integrated. There is a lack of:
􀂄 Certified medical experts for patients with DD

􀂄 Special medical services

􀂄 Support for clinical and health services research

􀂄 Training programs for medical personnel and caregivers who manage complex medical and behavioral conditions.

􀂄 Reimbursement for the extra time involved in care coordination, prevention and treatment.

􀂄 Physicians who accept the low reimbursements for patients dependent on public health insurance.

Lack of parent support.
Unlike their younger counterparts, this population lacks parent support.

􀂄 An estimated 30,000‐77,000 people with DD in California are currently living with caregivers over age 60. As parents age along with their children, eventually, they can no longer provide advocacy and care.

􀂄 Many adults with DD have no family advocates or caregivers.

􀂄 This lack of support is an issue because health problems generally become more complex as people with developmental disabilities age.

Policy gaps.
Since the 1970’s, many thousands of adults with disabilities have moved from institutions into the community. However, current policy and funding are not sufficient to protect them from neglect, much less to provide them with health care. Without appropriate oversight and comprehensive services, adults easily fall through the cracks.

The most important policy gaps include pragmatic approaches to:

􀂄 Maintaining, organizing and facilitating access to confidential information

􀂄 Obtaining informed consent

􀂄 Enabling the use of brief medical stabilization for procedures

􀂄 Providing independent advocacy

􀂄 Clarity on which agency is responsible for developing and funding behavioral services

The Solutions. About two years ago, a group of stakeholders convened to plan a pilot for a model of health care reform. Remarkable progress has been made in developing new funding, partnerships, and in expanding dialogue to include state and national leaders, researchers, and clinicians. The leadership includes:

􀂄 The Arc of San Francisco

􀂄 Faculty from the University of California, San Francisco

􀂄 Golden Gate Regional Center

􀂄 Health Plan of San Mateo/San Mateo County Medical Center

􀂄 San Francisco Department of Public Health

􀂄 University of the Pacific School of Dentistry

The CART Model. The long‐term strategic plan begins with building an academic unit within the Department of Family and Community Medicine at UCSF to provide clinical leadership and establish working relationships between the medical and developmental service providers. The Arc of San Francisco will lead an advocacy and policy campaign to develop resources for reform and will deliver health advocacy services. Health Plan of San Mateo is leading an effort to develop a multidisciplinary clinic. These projects will form a first‐in‐the‐country pilot to serve an entire community. A goal of the project is to evolve into a UCSF Center for Excellence in Developmental Medicine to support the CART Model:

􀂄 Clinical services in university and community settings

􀂄 Advocacy to influence policy

􀂄 Research programs in health services and education to rigorously study the cost effectiveness of our clinical and training innovations

􀂄 Training and technical assistance for medical professionals and caregivers



http://developmentalmedicine.ucsf.edu/odpc/docs/pdf/policy/Policy_CA.pdf